encopresis and school

[jamrobmic]

I have a niece who is six, and might be a budding difficult child. I've been out of touch with her mother (my sister) for about three years (long story-my sister has BiPolar (BP) and decided for a while that her family was the enemy), but we've recently reconnected.

My niece has had a problem with encopresis since my sister started potty training her around the age of three, and apparently things haven't gotten any better. She was put in kindergarten last year, but according to my sister, there were problems with my niece's behavior. My sister hasn't said exactly what my niece was doing, but she said the school recommended having my niece evaluated for special education (yes, I did tell her she was lucky the school was actually encouraging this, but she wouldn't allow it to proceed because she thought they were saying her daughter was mentally slow).

Fast forward to now. They have moved into a new school district, but my sister has been reluctant to put my niece in school because of the encopresis. Right now she's being home schooled. My niece says she wants to go to school, but my sister is afraid the other kids will make fun of her because of the encopresis. From what my sister has said, she did have the problem last year, but only went to school a half day, so it was easier to cope with. I think she needs to be in school, because she seems to be a pretty bright kid and would get more exposure to a broader range of subjects than I think she'll get in a home school setting, and because I think she needs to be around other kids (for the past three years she hasn't been around many other kids at all, except for the year she was in kindergarten).

I know my niece should be evaluated, but they are on Social Security (my brother in law passed away when my niece was three), and have no health insurance. Their doctor has tried to find any programs they might qualify for, but so far no luck. So no way could they afford an evaluation at this point in time.

Does anyone have any ideas/suggestions for dealing with encopresis in a school setting? My sister thinks she should keep home schooling until the problem is solved, but from what I've heard and read, that could be a very long time. Right now the doctor is working on helping them "cure" the encopresis, but I'm not sure my sister is following through on what she's been told she needs to do (because she doesn't understand how any of it would help-working on that, too).

Any help would be appreciated.

I just went back and re-read my post, and I should add that my sister does want my input, help, and advice. She's asked if I want to home school my niece, but I work full time, so that wouldn't work out. But I'm not butting in here, although my post might have sounded like it.

 

[Sheila]

Kudos to the sd. Highly unusual for most to want to intervene early. Fingers crossed that Mom will change her mind.

This problem seems to often co-exist with neurological problems we see on the board. (Another form of a developmental delay in my opinion.) If Mom doesn't want the evaluation, she may not find the school district willing to go "above and beyond" so to speak.

Things like leaving an extra changing or two of clothing in the nurse's office, scheduled potty breaks, frequent checking by the teacher are possibilities, controlling diet during lunch. She may want to have a little meeting with-the school nurse, teacher, and/or school counselor to see what they can work out.

If a medical problem hasn't be ruled out, it would be the first step. A developmental pediatrician may be her best bet.

If there's not a medical problem per se, Mom might want to consult with a pediatric occupational therapist or physical therapist to see if perhaps toning muscles and other exercises might help develop muscles or nerve endings that could help resolve the problem rather than wait until she grows out of it. (Growing out of it sometimes doesn't happen until early teen years.

I don't know if an Occupational Therapist (OT) or PT could help, but if you've been in a been there done that situation, the cost would be well worth a consult, in my humble opinion.

 

[wakeupcall]

I so hope something will work for your neice. My son was eleven last week and still suffers from encopresis. We've ALL had lots of tears over it.

 

[Estherfromjerusalem]

Dear Jamrobic,

What a good aunt you are to help your sister. When I was coping with my son's encopresis, it was him and me (and my husband) against the whole world. Sigh!

First of all -- take heart. It does go in the end. But there isn't any magic cure. Has the child been taken to a pediatric gastroenterologist? You say the doctor is helping. I know from my daughter's experience with her twin sons who both had encopresis, and she got really good treatment. The doctor can prescribe two sorts of medication that can help. One of them is to make the stools softer so that they are easier to pass, with less pain or no pain. The other medication makes the bowels move. Both these medications are not very strong, and are just in order to help the situation. Encopresis is a condition, not an illness. It is originally caused by constipation, so what is really important is not to give the child foods that cause constipation, but to make sure she eats plenty of fresh fruits and vegetables, and anything that contains a lot of "roughage" that does down and through and out.

As for coping with facing the school administration etc., I don't quite know what to tell you. My son's school was local, and as soon as he was old enough, I gave him a key, and he would phone me (reverse charges) and I would phone the school secretary and just tell her that he had my permission to leave school immediately. It didn't take long for her to understand the situation, and he would immediately leave and come home, let himself in, shower himself and change his clothes, and then either go back to school, or not. Actually, I think that's when our ODD problems began to surface, because he would roam around the streets. I'm not suggesting this to you as a solution; I'm just telling you what I did. I was at work, at the other side of town, and quite desperate.

They told me it would disappear with puberty. I didn't believe it. I was deeply depressed. And do you know what? It did disappear, when he was about 13. Just like that. To this day I don't understand it, but that is what usually happens apparently.

My daughter was more successful, and got rid of it much earlier with her boys. I think that besides the medications, she also used charts and stuff to encourage the boys -- you know, like if they were clean for a whole day, or two whole days, or a whole week, they got this or that reward, and she put stars on their chart -- you know, that sort of thing.

I don't think a child with encopresis needs Special Education. There's nothing wrong with their brains or their behavior. There's definitely something wrong with their bowels. It's like having diabetes or some other physical ailment. However, it is very hard coping with the social side of things. Children are very cruel.

Sorry I can't offer you any swift solution. There is also the side of how to cope with it at home. I'll happily tell you how we coped with it. I'm still traumatized, and he's now 20 years old. He's still traumatized too. It's a subject we are not allowed to mention to him. He takes far too many showers, changes his clothes all the time and I have so much laundry from him. But I go along with it and don't say anything, because after all his suffering I certainly don't want to say or do anything to cause more suffering.

Wishing you all the best. Feel free to ask anything else.

Good luck to your sister and her daughter.

Love, Esther

 

[jamrobmic]

Sheila-thank you, I think the things you've suggested would be very doable and would allow her to be put back in school in spite of her current problems. I think I've convinced my sister that Special Education doesn't necessarily equal unintelligent, so I think she's more accepting of the idea of testing now. I told her I would write the letter for her (and send it certified mail :smile: ). I'll mention the possibility of a developmental pediatrician and Occupational Therapist (OT) or PT. I really don't think it's in my niece's best interest to wait until her teens to put her in school.

PamelaJ-thanks for your good wishes. I hope you can find something that will help your son as well. Our kids are different enough without adding one more thing to keep them from fitting in with their peers.

Esther-thanks so much for sharing your story. I didn't have to deal with encopresis with my son, but I know very well the feeling of it being us against the world due to our other problems with him. And you're right about kids being cruel. Right now my niece is a very happy and secure little girl, in spite of this problem, and I would hate to see her change due to being teased about this. I'll also talk to my sister about the charts, etc., and to the doctor about the medications you mentioned.

Thanks again everyone for your help; I'll keep you posted as to our progress.

 

[Silverwater]

Dear Jamrobic,

What a good aunt you are to help your sister. When I was coping with my son's encopresis, it was him and me (and my husband) against the whole world. Sigh!

First of all -- take heart. It does go in the end. But there isn't any magic cure. Has the child been taken to a pediatric gastroenterologist? You say the doctor is helping. I know from my daughter's experience with her twin sons who both had encopresis, and she got really good treatment. The doctor can prescribe two sorts of medication that can help. One of them is to make the stools softer so that they are easier to pass, with less pain or no pain. The other medication makes the bowels move. Both these medications are not very strong, and are just in order to help the situation. Encopresis is a condition, not an illness. It is originally caused by constipation, so what is really important is not to give the child foods that cause constipation, but to make sure she eats plenty of fresh fruits and vegetables, and anything that contains a lot of "roughage" that does down and through and out.

As for coping with facing the school administration etc., I don't quite know what to tell you. My son's school was local, and as soon as he was old enough, I gave him a key, and he would phone me (reverse charges) and I would phone the school secretary and just tell her that he had my permission to leave school immediately. It didn't take long for her to understand the situation, and he would immediately leave and come home, let himself in, shower himself and change his clothes, and then either go back to school, or not. Actually, I think that's when our ODD problems began to surface, because he would roam around the streets. I'm not suggesting this to you as a solution; I'm just telling you what I did. I was at work, at the other side of town, and quite desperate.

They told me it would disappear with puberty. I didn't believe it. I was deeply depressed. And do you know what? It did disappear, when he was about 13. Just like that. To this day I don't understand it, but that is what usually happens apparently.

My daughter was more successful, and got rid of it much earlier with her boys. I think that besides the medications, she also used charts and stuff to encourage the boys -- you know, like if they were clean for a whole day, or two whole days, or a whole week, they got this or that reward, and she put stars on their chart -- you know, that sort of thing.

I don't think a child with encopresis needs Special Education. There's nothing wrong with their brains or their behavior. There's definitely something wrong with their bowels. It's like having diabetes or some other physical ailment. However, it is very hard coping with the social side of things. Children are very cruel.

Sorry I can't offer you any swift solution. There is also the side of how to cope with it at home. I'll happily tell you how we coped with it. I'm still traumatized, and he's now 20 years old. He's still traumatized too. It's a subject we are not allowed to mention to him. He takes far too many showers, changes his clothes all the time and I have so much laundry from him. But I go along with it and don't say anything, because after all his suffering I certainly don't want to say or do anything to cause more suffering.

Wishing you all the best. Feel free to ask anything else.

Good luck to your sister and her daughter.

Love, Esther

Sheila-thank you, I think the things you've suggested would be very doable and would allow her to be put back in school in spite of her current problems. I think I've convinced my sister that Special Education doesn't necessarily equal unintelligent, so I think she's more accepting of the idea of testing now. I told her I would write the letter for her (and send it certified mail ). I'll mention the possibility of a developmental pediatrician and Occupational Therapist (Occupational Therapist (OT)) or PT. I really don't think it's in my niece's best interest to wait until her teens to put her in school.

PamelaJ-thanks for your good wishes. I hope you can find something that will help your son as well. Our kids are different enough without adding one more thing to keep them from fitting in with their peers.

Esther-thanks so much for sharing your story. I didn't have to deal with encopresis with my son, but I know very well the feeling of it being us against the world due to our other problems with him. And you're right about kids being cruel. Right now my niece is a very happy and secure little girl, in spite of this problem, and I would hate to see her change due to being teased about this. I'll also talk to my sister about the charts, etc., and to the doctor about the medications you mentioned.

Thanks again everyone for your help; I'll keep you posted as to our progress.

Thank you for posting this. My son is 6 he’s had encopresis…well forever I guess. He’s definitely never pooped consistenly on the toilet. He will not talk about pooping or why he doesn’t want to poop on the toilet. All he does at school all day is worry. He’s 6 and in grade 1 but has many cognitive delays. I’ve been crying for the past hour about having to send him to school tomorrow knowing all he does there is worry. It’s not healthy for a 6 year old to have to worry all the time. It’s so sad he should be enjoying being a kid. He doesn’t have any friends he’s never had a friend. He’s only friends with his cousin and they are very close. I’m just at my wits end. Knowing that it might end during puberty gave me a little bit of hope because I don’t have any left to deal with this condition any longer.

 

[ksm]

I'm so sorry. I've never dealt with encopresis, so I have no advice. Just hugs. Maybe some other parents will respond soon. Ksm

 

[Copabanana]

I’m just at my wits end. Knowing that it might end during puberty gave me a little bit of hope

I am so sorry you are dealing with this difficult thing. And I feel for your child so much. I have IBS and when I am under a lot of stress the fear of flareups makes me anxious and fearful.

One thing that has helped me a lot when I have flareups is this: I am very careful to eat a lot of fiber. I build up to 3 T of psyllium fiber every day. (Please check with your pediatrician first). Every few days I make a large bowl of very watery oatmeal. I use 1 and a 1/4 c of old fashioned oats to 7 cups of water and cook it in the microwave. That gives me oatmeal for 5 days. Then each day I add 3 T of psyllium husk powder and a cup of water to 1 cup of already cooked oatmeal. I then heat this in the microwave. I add milk.

This is why I am giving you this recipe. The high fiber bulks up the stool and gives a person more control. It also increases regularity. If your son got to where he went to the bathroom at a set time every day he would have more control and feel more control.

When the situation is more acute for me I will note my bowel movements and the time on a calendar, so I would be more conscious. Honestly, there have been times when I had to wear a diaper to feel secure enough to leave the house.

I am an old woman. I have been very, very mobile in my life. This condition really stopped me in my tracks. I totally understand how overwhelming it must be for both of you. Finding some kind of mastery and order worked for me and I believe it could work for your son. There are also medications that can help him both in a biological sense and emotionally.

I would stress to him how many people deal with problems like this. I recognize encopresis is not IBS but in some ways the effects are similar.

It is not his fault, and you are not failing him. People deal with all kinds of things. This is life. Who knows? Having to deal with this as a youngster may give him the greatest compassion towards others and a great sensitivity.

 

[FranP]

This is such a frustrating and embarrassing problem. Working with your pediatrician to develop a bowel plan helps. My son had diminished sensation and lack of planning. Working with Miralax, extra fluids and time to potty helps. Spare clothes, wipes and plastic bags for removal of bad smelling clothing helps avoid social embarrassment. It’s a difficult topic. Hugs to all.

 

[Heartfelt_Mommy]

Kudos to the sd. Highly unusual for most to want to intervene early. Fingers crossed that Mom will change her mind.

This problem seems to often co-exist with neurological problems we see on the board. (Another form of a developmental delay in my opinion.) If Mom doesn't want the evaluation, she may not find the school district willing to go "above and beyond" so to speak.

Things like leaving an extra changing or two of clothing in the nurse's office, scheduled potty breaks, frequent checking by the teacher are possibilities, controlling diet during lunch. She may want to have a little meeting with-the school nurse, teacher, and/or school counselor to see what they can work out.

If a medical problem hasn't be ruled out, it would be the first step. A developmental pediatrician may be her best bet.

If there's not a medical problem per se, Mom might want to consult with a pediatric occupational therapist or physical therapist to see if perhaps toning muscles and other exercises might help develop muscles or nerve endings that could help resolve the problem rather than wait until she grows out of it. (Growing out of it sometimes doesn't happen until early teen years.

I don't know if an Occupational Therapist (Occupational Therapist (OT)) or PT could help, but if you've been in a been there done that situation, the cost would be well worth a consult, in my humble opinion.

We got a doctor’s note from the Dr stating that my daughter is diagnosed with enuresis/encopresis and we requested a 504 meeting in writing (email) develop a plan to help her at school. 504 is not SpEd. It deals with action plans for medical accommodations like what your niece is dealing with. Request the school nurse and counselor be present. The school is required by law to have this meeting and you must provide the diagnosis documentation for the school to put in place accommodations that they are legally required to follow.

Ours was along the lines of scheduled bathroom breaks via scheduled nurse breaks to protect her privacy and minimize other students knowing what was going on, access to the school nurse, frequent water/hydration breaks, access to her water bottle at all times, 2 changes of clothing on hand, parental notification (but not sent home) if a change was needed, no consequences for accidents or apparent intentional soiling in response to teacher directives, drawing as little attention as possible to incidents, avoiding known triggers, well as many of the other things mentioned in other comments.